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Patient-oriented research in Canada: what progress has been made?

The governments of Canada and the United States have patient-oriented research initiatives underway, which share the goals of supporting research that will improve health care systems and directly benefit patients.

However, the mandate, structure and funding of these initiatives differ significantly, with the United States accomplishing a great deal in a relatively short period of time, compared to Canada.

On August 22, 2011, the Honourable federal Minister of Health, Leona Aglukkaq, unveiled Canada’s Strategy for Patient Oriented Research (SPOR) at the annual meeting of the Canadian Medical Association in St. John’s, Newfoundland. The choice of venue, the largest national meeting of Canada’s doctors, underlined the importance of the announcement as the Minister revealed an ambitious new approach which promised to change the practice of medicine, ensuring “that research will have a greater impact on treatments and services provided in clinics, hospitals and doctors’ offices throughout Canada.”

A year after the official announcement about SPOR, it seems appropriate to consider its progress, and compare it with an initiative in the United States, the Patient-Centred Outcomes Research Institute (PCORI) which has a similar mandate and has been under way for roughly the same period of time.

With health care spending in Canada topping $200 billion in 2011, and publicly-funded provincial health care systems dealing with sicker patients and stretched budgets, it is difficult for any provincial government, taxpayer, patient or doctor to disagree with the importance of conducting practical research to determine the best ways to deliver health care so that the needs of patents are met.

The Patient-Centred Outcomes Research Institute in the United States

PCORI was founded in 2010 as part of the Affordable Care Act. The reason for establishing PCORI and SPOR seem to be almost identical. Sean Tunis, President of the Center for Medical Technology Policy says that PCORI’s “was inspired by the view that reliable evidence about which health services work best for which patients is needed to inform clinical decisions and health policy decisions”.

PCORI was legislated as a separate body from government, with a clear budget, mandate and institutional structure. Harlan Krumholz, a Professor of Medicine at Yale University and PCORI board member notes that “there is no direct accountability” of PCORI to the American government, which others have suggested will ensure important flexibility in ensuring scientific independence, and prevent political interference in funding important clinical research.

PCORI receives direct annual support from the United States Treasury, as well as annual fees per individual assessed on Medicare, private health insurance and self-insured plans. Together, these revenue sources are expected to give PCORI an annual budget of about $650 million per year from 2014-2019. Under the current legislation, PCORI will cease to exist after 2019.

PCORI has already had a number of concrete measures of progress. It has recruited an Executive Director and a Board of Governors consisting of individuals described to healthydebate.ca as “the cream of the crop”. It regularly publishes meeting agendas and major documents online. PCORI has identified and publicly released five research priority areas, with funding offered to groups of researchers and organizations pursuing work in these areas. Last month, a group of respected researchers released for consultation a draft set of standards for doing patient-oriented research, which include how to engage patients in various aspects of health research.

How does SPOR compare with PCORI?

Perhaps most importantly, SPOR is a strategic initiative of the Canadian Institutes of Health Research, and is not a separate entity with a guaranteed budget. This means that the Canadian Institutes of Health Research is actively seeking partnerships with provincial governments,the pharmaceutical industry and others to fund SPOR-related research. However, because SPOR lacks a concrete federal government funding commitment over the next few years, informants familiar with the strategy tell us that this makes it difficult to secure matching funding from some of the provinces. Informants also tell us that the pace of progress on determining provincial priorities for SPOR research, and securing funding, varies considerably across the country. This has lead a number of researchers to privately express frustration with what they perceive is an unfocused strategy with slow progress.

However, Jacques Magnan, CEO of Alberta Innovates – Health Solutions and a SPOR steering committee member, says that “in spite of frustrations around how slow this has been going forward” the approach led by CIHR around SPOR “as a partnership between the national [health research] funding organization and provinces is the only way to go.” While the Strategy has highlighted the need for improving provincial health care systems, Magnan says that the “there is no one size fits all solution” when it comes to provincial health care systems, patients and research priorities.

Another apparent difference between PCORI and SPOR is the focus of the two strategies. The mandate of SPOR seems broader than that of PCORI. PCORI’s five priority areas are all clearly linked to the delivery of health care. The most recent documents from SPOR suggest a much broader mandate, including early studies in humans, commercialization, clinical trials, and research on the delivery of health care.

The future of SPOR

It is only one year since Minister Aglukkaq announced the federal government’s commitment to SPOR, so it is perhaps unfair to expect major progress already. However, it is difficult not to be struck by the speed with which PCORI has been established, set priorities, and started to fund research.

Some of the difference in the speed of progress are almost certainly due to a major infusion of new federal dollars in the United States, which to date have been lacking in Canada. One also wonders whether establishing PCORI as an entity separate from government has allowed it to move ahead rapidly. The fact that health care in Canada is delivered provincially, with different regional priorities and funding, can make the development of a national patient-oriented research strategy difficult in Canada.

Many committed, talented and thoughtful individuals are working hard on SPOR – it will be interesting to see if the way SPOR is funded and governed will allow it to achieve its goals.

Do you think that Canada's Strategy for Patient-Oriented Research can achieve its goals given its structure and funding?

Enter the debate: reply to an existing comment

6 comments

Dr. Michael A. WosnickAugust 21st, 2012 at 4:02 pm

Quote from the article:

“PCORI was legislated as a separate body from government, with a clear budget, mandate and institutional structure. Harlan Krumholz, a Professor of Medicine at Yale University and PCORI board member notes that “there is no direct accountability” of PCORI to the American government, which others have suggested will ensure important flexibility in ensuring scientific independence, and prevent political interference in funding important clinical research.”

The fact that SPOR does NOT have this type of structure is its biggest failing in my view. I highly endorse the principles behind SPOR but remain skeptical it will accomplish any of it goals as long as it is a political instrument (which I believe) and does not have independent (and substantial) funding.

The CIHR and SPOR should require the inclusion of patients as part of grant applications to help ensure that the research conducted is truly going to benefit the end user. We have been excluding patients for far too long, carrying on with the way things have always been done and expecting a different result. It is time for change and maybe we will see improvement in health outcomes and better value for the dollars spent.

This article is forgivably charitable towards CIHR, and doesn’t take into account that CIHR was talking about an initiative in POR for at least 6 years prior to the federal non-announcement in 2011, so the speed of action is glacial. If CIHR believes POR is a priority, it should be putting its own money on the table and into the clinic, and not waiting for the provinces to sign up before acting. I understand this is very difficult when the federal government is cutting your funding, but leading by example is more likely to persuade than leading by talking.

I think you said better and more directly what I was getting at :). It always amazed me that SPOR was deemed one of CIHR’s highest priorities, yet was going to be implemented ONLY if funds could be raised. That’s not my idea (nor yours) of how to set or implement strategic priorities.

On the other hand I was loathe, positively loathe, to contemplate this coming out of an already dangerously depressed CIHR research budget, so I definitely saw the appeal for Alain Beaudet and others to want to use this as collateral to get more money.

Having watched PCORI from afar over the last few years, their greatest strength has come from being able to set priorities and make decisions about their focus. They, too, started with a blank slate and worked their way through an extensive and very inclusive consultation process. They have managed to bring all the players to the table in both their governance structure and their consultations, have recognized their contriutions, given them a voice, and then made choices about what they will and will not do. Having spent many years in government, I can say that it is often the latter that is our greatest failing – that is, making the hard decisions that help keep us focussed and, thus, able to deliver concrete results. Instead, we tend to try to be everything to everyone and that, sadly, is what is likely to undermine progress in the long run. SPOR’s premise is important, so I hope I’m shown to be wrong.

Mark,
Having had a distinguished career at the CIHR, you are certainly very well placed to comment on CIHR’s role or lack thereof in SPOR. I agree it would have been preferable if CIHR had rolled this out earlier. However, I don’t agree that they should have put (more of) their “own money on the table and into the clinic” to make it happen. CIHR has been extremely successful in fostering different types of research in Canada; and indeed many researchers in Canada are internationally renowned, largely because of CIHR funding. The funding situation for researchers in Canada is precarious, and I think it would have been a big mistake to take funding away from other very successful programs to make SPOR happen. It would have created a huge pushback from many scientists, especially basic scientists, it would have generated dissension in the scientific community, and it could have led to the exodus from Canada of our best scientists.
The health care system in Canada is roughly a $200 Billion dollar business, largely run by the provinces and Territories. A business of this size should be funding the kind of research envisioned by SPOR. Research under the rubric or SPOR has direct implications for the care of patients (e.g. clinical trials), and the health care system (e.g. health services research and quality of care). The provinces should have made SPOR (or a similar strategy) a priority years ago, and they should be playing a major role in funding this program now. Current investments by the provinces (and especially Ontario) in terms of health system research is a tiny fraction of what it should be. Any innovative business of this magnitude should be spending much more on better ways to do their business. Despite the obvious shortcomings of the American health care system, PCOR represents an appropriate investment by Government to improve the health care system.
Similarly, the pharmaceutical industry will be a major beneficiary of SPOR and should also play a role in funding research that is relevant to them (e.g. clinical trials). But I must admit that this is a business decision on their part, and I don’t think that they have an obligation to do so; whereas, I think that the provinces do have an obligation to support a SPOR-like program, which will have a direct impact on their citizens.

This document is provided under the terms of a CreativeCommons Attribution Non-commercial Share Alike license. The terms of the license are available at: http://creativecommons.org/licenses/by-nc-sa/3.0/. Attributions are to be made to HealthyDebate.ca, a project under the direction of Dr. Andreas Laupacis, at the Keenan Research Centre, Li Ka Shing Knowledge Institute of St. Michael’s Hospital.